AUGUST 14, 2018
MANY YEARS AGO, a patient I’ll call Alice had weakness, fatigue, brain fog, and joint pains that I was unable to diagnose. Eventually she took matters into her own hands. After connecting on the internet with others who suffered similarly, Alice determined that she had chronic Lyme disease. Through this online community she found a physician with a reputation for being Lyme literate — meaning that, unlike most doctors and medical organizations, including the Centers for Disease Control and Prevention, he believed that in certain people (the majority of them women) Lyme infection can persist after the standard 14- to 21-day course of antibiotics and cause symptoms such as those Alice experienced. He prescribed high doses of doxycycline and erythromycin over many months. Sometimes the treatments made Alice feel better and sometimes, when she sensed that the drugs were killing large numbers of borrelia burgdorferi, the spirochetal bacterium that causes Lyme, she had painful Herxheimer reactions or “herxes,” as chronic Lyme patients call them.
Depending on your perspective, Alice had either reclaimed her autonomy from a patriarchal medical system dismissive of patients, particularly of women with difficult-to-diagnose conditions, or she’d fallen prey to a charlatan who charged her large sums of money to treat a fictional disease.
Few medical topics are as divisive as chronic Lyme disease or, as it is often referred to in medical journals, “chronic Lyme disease.”
A June 2018 editorial in the American Journal of Medicine asserts that chronic Lyme disease does not exist and that “Lyme literate physicians” are quacks in cahoots with shady labs that perform tests rigged to confirm the specious diagnosis. The editorialist, Phillip J. Baker, PhD, of the American Lyme Disease Foundation, argues further that the notion that Lyme is a “strange and mysterious” disease about which not much is known is false. Lyme testing is quite reliable, he states, and the scientific evidence on which current international guidelines regarding diagnosis and treatment are based clearly contradicts testimonies of individuals who claim to have chronic Lyme. The reason more resources aren’t being directed toward researching chronic Lyme disease is that there is nothing to research.
Within days of the publication of Baker’s editorial, an article appeared in Slate that might as well have been written to refute it directly. In “The Science Isn’t Settled on Chronic Lyme,” Maya Dusenbery and Julie Rehmeyer argue that doctors’ refusal to acknowledge the possible existence of chronic Lyme disease is driven less by science than by sexism. Dusenbery recently wrote about sexism in medicine in Do No Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. In her 2017 memoir, Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand, Rehmeyer wrote about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), another condition that, like chronic Lyme, affects mostly women and which many doctors consider psychosomatic. They don’t claim to have an answer to the question of whether or not chronic Lyme exists but, rather, suggest that gaps in our current knowledge of Lyme make the question worth asking. They point to the unreliability of symptoms and blood tests in diagnosing Lyme early, and to data indicating that some people may have abnormal spinal fluid and brain scans long after standard treatment for Lyme, as well as to other uncertainties that would seem to make Lyme merit further study, especially given that the infection, once mostly confined to the northeastern United States, is now endemic throughout much of the world. The reason medical scientists don’t study chronic Lyme isn’t that they’ve proven it doesn’t exist, Dusenbery and Rehmeyer write, but rather, “the attitude of ridicule for chronic Lyme is part of why we don’t bother to research it.”
These opposing views of chronic Lyme seem irreconcilable: chronic Lyme is either definitely phony or possibly real; chronic Lyme patients are either “head cases” or people suffering from a serious and poorly understood disease; doctors who dismiss chronic Lyme are either responsibly practicing evidence-based medicine or they’re sexist jerks.
When I first opened Porochista Khakpour’s new memoir, Sick, about her pursuit of recovery from chronic Lyme over many years, I felt sure I knew where she stood in “the Lyme wars,” as the controversy has been called in both medical journals and the media. The very title of the book declares: “I really am sick.” The cover photograph, of Khakpour staring straight ahead, wide-eyed, oxygen prongs stuck in her nostrils, feels both defiant and accusatory. This is not a woman who is merely suffering. This is a woman who has been made to suffer.
Indeed, for the most part, doctors, particularly male doctors, come off badly in Sick. As a child, Khakpour is given insufficient anesthesia during ear surgery; as an adult, the ER staff laughs at her; a “gloomy” psychiatrist she consults looks “like black and white newsprint”; and a flashy L.A. physician who touts himself as “VIP Medical Concierge” reassures Khakpour, unreassuringly: “Don’t worry. We’re gonna run every test there is.”
With each medical encounter, Khakpour risks harm. Doctors usually don’t make her feel better, and often make her feel worse. Their disbelief in chronic Lyme erodes her humanity, leaves her “faded.” She has a positive Lyme test (many people diagnosed with chronic Lyme don’t) but this earns her little credibility with “so-called medical professionals.” Khakpour is well aware of their scorn:
I had been to the hospital so many times for my Lyme disease, not just explaining but overexplaining, as if I had something to hide. Lyme is a disease that many in the medical profession, unless they specialize in it, find too controversial, too full of unknowns, to buy it as legitimate. It’s thought of as the disease of hypochondriacs and alarmists and rich people who have the money and time to go chasing obscure diagnoses.
When doctors fail her, Khakpour seeks relief from healers who offer supplements, Chinese herbs, bee sting therapy, psychic readings, and other alternative treatments. This effort is not only expensive — Khakpour estimates she’s spent $140,000 on chronic Lyme — but it also results in a frustrating, self-perpetuating cycle familiar to many with conditions about which doctors are skeptical: doctors’ dismissal drives Khakpour to look for help outside conventional medicine, which makes doctors dismiss her even more.
It’s easy to see why Sick has been grouped in several reviews with other “illness manifestos,” recent books by women who insist on the validity of women’s experiences of and decisions about their own bodies, even when — especially when — those experiences and decisions are deemed invalid by a male-dominated medical establishment. These books include both Dusenbery’s and Rehmeyer’s as well as Abby Norman’s Ask Me About My Uterus, in which Norman recounts her struggle to have her endometriosis pain acknowledged and treated appropriately by doctors. They also include Michele Lent Hirsch’s Invisible, about how the health problems of young women such as herself are negated and, at the other end of the age spectrum, Barbara Ehrenreich’s Natural Causes, her declaration that, in her 70s, she is no longer buying the health industry’s prescriptions for immortality. Unrest, a 2017 documentary by Jennifer Brea, who suffers from ME/CFS and has become an activist for recognition of and research into this condition, is also frequently discussed in this context.
But Khakpour is no activist, and Sick is not an illness manifesto. Though Khakpour never abandons her belief that she has chronic Lyme, she doesn’t insist that her readers believe she does. Nor is it necessary to accept the legitimacy of chronic Lyme to embrace Khakpour’s story. She holds firm to the diagnosis, but she’s open to its many possible meanings.
Khakpour considers the possibility that she’s had Lyme for most of her life, having contracted the disease from a tick bite while hiking in the California mountains that reminded her father of Iran, from which the family fled after the revolution in 1978. Or perhaps she acquired the infection much later, and it compounded the PTSD she developed as a child refugee. Dislocation, not Lyme, is Khakpour’s central theme. She organizes Sick geographically rather than chronologically, with the names of the many places she’s lived — “New York,” “Maryland and Illinois,” “Santa Fe and Leipzig” — serving as chapter titles. Khakpour never feels at home where she lives, or in her own body. She often conflates her Lyme with her perpetual sense of displacement: “I have never been comfortable in my own body,” Khakpour writes. When her Lyme flares, she describes herself as feeling “off,” by which she seems to mean “not right” and also, in the literal sense, “not there.”
Many memoirs use illness as a prism through which to refract, and magnify, the themes of a life. Where Sick differs from most illness memoirs — indeed from most memoirs generally — is that it is not a tale of redemption. Khakpour eschews the arc that takes the memoirist from sick to well or, at least, to enlightened. At the end of Sick, Khakpour admits that she’d intended to write a more uplifting book: “The Book I Sold was a story of triumph, of how a woman dove into the depths of addiction and illness and got well. She got herself better. She made it. The Book I Sold might even imply you can do it too.”
Except that Khakpour doesn’t feel transformed by her illness in a positive way. In Unrest, Brea, though profoundly impaired by ME/CFS, expresses gratitude along with grief: “You have to be able to hold two things in your head,” Brea says. “This illness destroyed my life but what it showed me, I could never give that back.” For Khakpour, there is no silver lining. The list of plagues Khakpour endures — and seems always on the brink of not enduring — from Lyme and from life includes: paralyzing weakness, crippling fatigue, suicidal depression, panic attacks, insomnia, drug addiction, racism, family discord, war, homelessness, financial catastrophe, car accidents, and disloyal lovers, to name a few. The narrative tension in this messy and beautiful chronicle exists not so much between the heroine and her trials, but between the writer and the reader. In Sick, Khakpour challenges us to do what countless doctors, friends, romantic partners, and her parents have failed to do: witness her pain without turning away.
This is not nearly as depressing as it sounds. In fact, it’s not depressing at all. Despite her woes, Khakpour is excellent company. She has many friends and includes in her memoir an email she sent to them after a Lyme relapse left her dizzy and confused: “would you mind occasionally checking in on me?” She could also use some help walking her dog and riding the subway. This email appears early in Sick, and at first it’s hard to imagine it receiving an enthusiastic response. As her memoir unfolds, though, Khakpour’s intelligence, humor, and the generosity with which she exposes her vulnerability make us certain that her friends would be eager to help her. We’d help her.
Part of what makes Khakpour so compelling as a narrator is that she rejects the limited menu of identities we usually afford the ill and disabled, in life and in memoirs: brave or pitiful. Khakpour is sick but never only sick. She’s a party girl, a stunner in designer clothes. She wins prestigious fellowships and lands glamorous jobs. She has lots of sex.
The one place Khakpour does feel at home is writing. As a child, she retreated from her parents’ loud arguments by making up stories. “[S]torytelling,” she writes, “from my early childhood was a way to survive things.” Storytelling continues to serve as Khakpour’s refuge through a young adulthood marked by illness, addiction, poverty, and bad relationships. We breathe relief each time Khakpour’s writing leads her to a safe harbor: a college mentor, an MFA program, a book contract, a teaching gig. Yet, another familiar narrative Khakpour resists is that writing, including the writing of Sick, has healed her. She’s wary, too, about her “wish to tie the threads of narrative so neatly,” to have Lyme make sense of her life. She leaves her conclusions ambiguous. Khakpour finishes Sick: “The story didn’t end as I imagined so many times: in the end I would make it.”
Does she mean she would “make it” à la Mary Tyler Moore (“You’re gonna make it after all”)? Or that, in the end, what she would make was the story itself?
Alice, my patient with chronic Lyme, continued to see me for primary care, despite knowing I had concerns about the prolonged antibiotic treatment her Lyme doctor was administering. Ultimately, her weakness worsened and she was diagnosed with a rare degenerative disease, which I thought in retrospect explained all her symptoms. She discontinued the antibiotics and quit seeing the Lyme doctor but, to my surprise, Alice never stopped believing she had chronic Lyme. Who was to say that the chronic Lyme had not coexisted with or even accelerated the degenerative condition? she asked me. Or that the antibiotics she’d taken for Lyme hadn’t held this other disease at bay for a few years?
I wish Sick had been available when I knew Alice. I think Khakpour could have helped me understand our relationship better. At the time, I thought that the reason Alice pursued alternative therapy was that she was grasping for the certainty of a diagnosis, the promise of a cure. That was true, but I was grasping for certainty, too: the certainty that Alice’s pursuit was misguided. I plan to recommend Sick to my medical colleagues. Khakpour has made a major contribution to patients and doctors in moving the intractable “Lyme Wars” narrative beyond unhelpful binaries such as “real” versus “psychosomatic.”
The last time I saw Alice she was bedridden and could no longer speak. With great effort, she scrawled a message to me, one with which I agreed completely. It read: THIS IS VERY BAD.
Suzanne Koven is a primary care physician and writer in residence in the Division of General Internal Medicine at Massachusetts General Hospital in Boston. She writes regularly for The Boston Globe and other publications, and contributes the interview column “The Big Idea” at The Rumpus. Her website is www.suzannekoven.com.